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Ulcerative Colitis
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Posted 10/20/2011 8:52 PM (GMT 0)
Dr wants me to go for another Prometheus test. She thinks I need more Imuran, but I don't think I do. I'm going 3x/day which is ok by me compared to the 30x i was going in the beginning of this whole ordeal. I'm already on 150mg/day. I don't really like being on this stuff as it is, but I really have no choice. I'm not going to the hospital to have this test done and I'll just tell them why at my next visit in November. I'm really scared of this medication I guess because it can cause cancer and to increase it increases my chance of getting even more cancer. Would you go for it if you thought you don't need anymore?

~Stoolie

Posted 10/20/2011 9:10 PM (GMT 0)
     ABSOLUTELY NOT!!!  I agree with you 110%!  I was on 50 mgm of 6MP for seven years.  It really didn't keep me in any long term remission.  In the summer of 09 my GI doctor increased my dose to 100 mgm.  Well, I started to feel terrible!  My bilirubin was twice the normal limit, my pancreatic enzyme levels were off the wall!  He quickly took me off the 6MP.  about a month later placed me back on the 50 mgm but monitored my blood work very closely.  Two weeks before my first infusion of Remicade he took me off the 6MP completely because he said it was too risky to be on both meds.  Long story short.....Remi failed, as did Humira.  I chose to have surgery last year...best decision I ever made yeah .
Posted 10/20/2011 10:17 PM (GMT 0)
Thank you Christine for your reply. I appreciate it very much.
Posted 10/21/2011 12:00 AM (GMT 0)
Stoolie, 150mg is an average dose (I think, I take 6mp - I am not quite as familiar with Imuran) but I can see her wanting to do the test to see whether you're in the theraputic range and how your liver is reacting. I don't think the results will necessarily show that you need to adjust the dose but it is good to know where things stand.
Posted 10/21/2011 12:18 AM (GMT 0)
Ok then notsosicklygirl, I'll have it done. It's good to know just where I stand with all of this. Thank you.
Posted 10/21/2011 12:54 AM (GMT 0)
Are you getting regular blood tests like a CBC?  If so, you should already have an idea if it's affecting your liver or white blood cells.  The Prometheus test won't do that. 

You should also consider that your insurance company might not pay for a second Prometheus, and they're on the expensive side.

Why can't you increase the dose by 25 mg every month and follow up with general blood work more frequently, like every two weeks?  If your symptoms improve and your labs are fine, I can't see why your doc would object to that strategy, which follows protocols outlined in lit reviews.

 

Posted 10/21/2011 3:05 AM (GMT 0)
I just had the blood work and everything looked good except the iron was alittle low which she increased the feosol to twice a day. I think I will suggest this approach when I go to see her. You're so right about the insurance. Thank you for the suggestion.
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